Ann and education

[Guest guest]

Ann,

I hope that you understand I know nothing about services in Canada and didn't

mean to say anything wrong. What I do know is that you and Dr. Blake are the

true " specialists " of CHARGE Syndrome up there. Your knowledge and kindness

have been helping others for years. That is understood and I am sure the

parents, families, and people with CHARGE know this and are grateful to have

you.

What I do know is state of CT and am now learning MA. I know what it is

to be a parent, and an employee. There are those who didn't understand why I

didn't allow some things like our schools vocational program for Patty in our

town. This is the same town I grew up in 42 years ago. I used to volunteer

as a high school student in the very same " contained " classes they wanted to

put Patty in. The program changed little from 25 years ago. Even the attitude

is the same. I was a parent who refused some things and pushed for others.

Our d/b specialist for Patty was a godsend. But she didn't work there. It was

consultation. At the meetings I looked like a horrible parent refusing

" great " things. Actually I was the parent who knew better. Patty's specialists

would come and observe Patty often and work with the teachers. I tried to say

many times that things were different when she wasn't there. I don't know if

she believed me. What I do know is I worked in the same school system. For

years I would see when a consultant of any sort came in the programs changed. I

worked in a class where there was a boy who had blindness. When the

consultant came in they were so kind and wonderful. But the moment they left

the child

sat in a corner of a room reading a book, not doing math, not doing spelling,

not having the opportunity of interacting with the other children. They made

statements to me that the town was spending too much time and money on this

one child. So, I documented that and turned them in. Nothing was done.

I also turned in staff members for abuse. I worked in a classroom with

nonverbal children who lived a life of frustration. In this classroom the

teacher and a OT would hold the hands of the autistic children who would flap

because it bothered them. I mean hard. They would even say if you pinch the

fingernail of the child it hurts them but doesn't leave a mark. For the child

with

auditory sensitivities if she cried when the TV was turned on suddenly

without her knowing it was going to happen they put headphones on her and held

her

there while they turned the TV on and off, on and off, on and off and then left

it on the channel with white noise! Worse of all there was a child who they

used to pull her hair when she would run away, if she wet her pants they would

make changing so " uncomfortable " for her so she wouldn't do it again. They

said they hated the mother because she was a pushy person and they took it out

on the child. I stayed in that job for a few years to " keep the children

safe. " I needed a job for insurance and they knew it. After a while they

wouldn't do these things when I was in the room, but the moment left horrible

things

happened. I even had to not have a routine so they wouldn't know when I was

coming or going. It was horrible. And yes I did see these things happen. I

quit that job finally. Yet it was the very same people I had to sit across the

table with at PPT's and they would sound like they were marvelous. Oh and

they said they " loved " Patty. I knew different. They also didn't understand

Patty. Yet they continually said I was the one who didn't accept my daughters

disabilities. It actually made me sick. I did speak to the parents. I

eventually started a parent support group in that town which now has begun to

change

things. But I was that " horrible mother. "

By the way, the little girl who they pulled her hair died recently. I

loved this child. As a gift to her I cantered at her funeral. The most abusive

teacher who I and others turned in had quit her job and had moved. At the

funeral there was that very same teacher sitting in the pews. She actually

cried and then hugged the parent. It makes me sick.

I don't think I will ever get over the trauma of what happened with

Patty's education. It was a battle we shouldn't have had to fight. But with

all

the horrible things there were many, many marvelous and gifted educators,

special educators, and consultants who led Patty to where she is now. It was

just

a few bad apples that spoiled the bunch. But I had to keep on top of things.

It was always about money or power by the way. There are many things I

should have done as well. I should have gone to due process. I should have

fought

harder for sign language, I should have fought for technology harder. ALL

CHARGE KIDS SHOULD HAVE APPROPRIATE TECHNOLOGY. That makes the playingfield

more even. I should have fought for after school programs. I should have

fought

for social opportunities. There is so much I should have done.

But if you talk to the idiots they will say I denied some services. Yes,

I did. I denied ancient, archaic services run by mean people who didn't know

what they were doing. Yet they smiled their smile and sometimes won over

others. It was the true teachers who would call me privately, send me messages,

who would tell me what to do, how to do it, what to fight for that made

Patty's life much easier and she learned, and learned, and learned. They are

gifts

of Patty's life of which I will never be able to show my gratitude.

I am trying to get over the feelings of hurt for what Patty didn't get

educationally. I am trying to get over the guilt. I don't think I ever will.

Medically we did what we had to get her to live her life as healthy as

possible. Yet it was her education that gave her the opportunity to have a

life. If

you don't get the appropriate modifications and understanding of the impact

of not only deaf/blind but adding in all the other CHARGE issues as well then

you miss out on the true appropriateness of the persons education. I never

knew how far she could go and what she would do, but I tried to make sure she

had

a chance. I still don't know. So many times here I have said education is

just as important as medical interventions. Now that Patty graduated that is

more evident than ever. Patty had a good education. But now I know it could

have been better.

OK, so I went on this rampage. The scars are deep and I don't think they will

heal.

For the next conference I really think we need to gather to get a national

(US) label for deaf/blind for adults. There isn't one. All the CHARGE children

will one day be adults. Ther is a big void out there when they become

adults. Watch out guys, every state is different. I also think we need to

somehow

have more educational information for individuals with CHARGE. Each child is

different, but there are many, many similarities. But hey, that is just my

opinion. What about you guys?

Ann, like I said, you are a gift to your students. That is known. They are

lucky to have you. You are vital to their lives. I am sure you are a gift to

the families as well. As the vice president up there in Canada I hope you

are getting the word out to the families there about the impact of education.

If I knew then what I know now....

Bonnie, Mom to a 21, Patty CHARGE 19, and wife to